A WARNING for You and HOPE for Me

I’ve written so many times about my Fibromyalgia (ME)/Chronic Fatigue symptoms that they bore even me. However . . .  COVID-19 symptoms and Fibro/Chronic Fatigue symptoms have an eerily similar overlap.  Some people who have had COVID-19 are experiencing a slow, protracted recovery with chronic, unremitting exhaustion, body aches,  mental fog, strange dermatological sensations or rashes, gastrointestinal issues,  irregular heartbeats, depression . .  

“COVID-19 may produce a lot of ME/CFS-like cases. Will we be able to use them to understand ME/CFS?
A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds one of ME/CFS.  For one, it’s causing weird symptoms (loss of smell and taste, buzzing, electric, vibrating sensations, red/purple faces, purple toes, pink eye, digestive issues, nausea, dizziness, cognitive issues) that aren’t usually associated with a virus.”
“The director of infection prevention and control at Mount Sinai Hospital attributed the weird fizzing-type sensations to the immune system acting up:

Immune Responses
“Our immune cells get activated so a lot of chemicals get released throughout our body and that can present or feel like there’s some fizzing. When our immune response is acting up, people can feel different sensations… I have heard of similar experiences in the past with other illnesses”.’

My own immune system is in chronic overdrive with chronically elevated. cytokine levels.   When I first read about the COVID-19 cytokine flooding that causes organ failure with viral infections I immediately went into isolation – weeks before anyone even suggested isolation. 

THE WARNING:

“It leaves something inside you – and you never go back the way you were before.”  Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS.”

Charcoal on paper by judy

“Paul Garner, an infectious disease professor, and Director of the Centre for Evidence Synthesis in Global Health, and Co-ordinating Editor of the Cochrane Infectious Diseases Group, knows infections on both a personal and professional level . During his tropical infectious disease research, he came down with malaria and dengue fever, but nothing he’s encountered has compared to his bout with COVID-19.
In the British Medical Journal Garner, called post COVID-19 a: “a roller coaster of ill health, extreme emotions and utter exhaustion.”
Garner doesn’t appear to be describing post-COVID-19 illness so much as he’s describing a descent into ME/CFS. All the hallmarks are there – the post-exertional “malaise”, the delayed and mind-boggling symptom flares after little exertion, the inability to understand his limits, Garner talked about the “apparition”, a semblance of improved health that kept getting smashed as he innocently overreached.
“People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms and their unpredictable course.”

“Some of the longest-suffering Italians are finding themselves in physical and financial uncertainty, unable to shake sickness and fatigue and get back to work.”
“We have seen many cases in which people take a long, long time to recover. It’s not the sickness that lasts for 60 days, it is the convalescence. It’s a very long convalescence.” Alessandro Venturi, director of the San Matteo hospital, Pavia, Italy.”

“Another doctor noted that after all the different, initial symptoms were gone, it was the fatigue that remained. That rang bells. Early studies of the ME/CFS outbreaks came to the same conclusion: the early symptoms were often different but the fatiguing state that ultimately remained was quite consistent.”

 MY HOPE

“Because we generally, in the past, haven’t taken viruses seriously, we simply tell patients to ‘go home and rest up’. The significant fraction (which might be as high as 1-10%) of patients who do not recover normally after infection have often been marginalized and forgotten.”
This time there may simply be too many unrecovered patients for the NIH and other medical funders to ignore. 
“An unexpected element is a growing number of reports that even people with mild Covid-19 illness, who didn’t go to hospital, are experiencing long-lasting symptoms. Some people infected in February or March are still being ambushed by extreme fatigue, headaches, sudden breathlessness and problems concentrating or doing even light exercise.”
Many will probably recover, but if COVID-19 patients go the way of past Ross River virus, Coxsackie B, Giardia and SARS patients and others, a subset will remain quite ill.”

So, you ask, What’s HOPEFUL about THIS?


The Open Medicine Foundation Launches International ME/CFS COVID-19 Study
Research into Fibro (ME)/Chronic Fatigue has had few funds for  research even though there are estimated tens of millions of people in the world with that diagnosis.  
But now the entire world is focused on COVID-19. More research in a shorter period of time has been put to work on COVID-19 than ever before. With hundreds of thousands of people potentially coming down with post-infectious illnesses, there’s an opportunity to include fibro/chronic fatigue into the biggest, single medical research effort ever.”

The Open Medicine Foundation (OMF) will produce an international effort to understand how COVID-19 turns into ME/CFS. The OMF’s four-site COVID-19 study (Stanford, Harvard, Canada, Sweden) will collect body fluids, do continuous health monitoring using wearables, and collect symptom data over two years. Its genomic, metabolic, and proteomic analysis will attempt at the molecular roots of ME/CFS as it occurs.

“With the NIH otherwise occupied, Open Medicine Foundation’s COVID-19 research effort is our best chance at helping both people with ME/CFS and COVID-19 patients who are having trouble recovering. In fact, it’s the only effort going right now that seeks to directly understand and help the possibly many people, who, after surviving COVID-19, find their lives unalterably changed.”

Your Warning and My Hope:

Stay Vigiliant.  Be Safe.  Wear a Mask.  Social DIstance.  Stay Isolated if possible.  

Don’t think because you are healthy now there can not be long term consequences . . . and I’m speaking from experience.

judy

 

Click here For a list of other post COVID-19 efforts/studies that are underway and the full article

There’s an Elephant in the Room – Self Isolation, Series ON!

If indeed you despair

Isolation needn’t be a bear

Find your own elephant  

 whose advice waxes eloquent

(not to mention relevant)

And if your friends are petulant

 please share!

We’re all about self-care

Click on each image to read Elph’s guidance

First Week of Self Isolation

Second Week of Self Isolation

Third Week of Self Isolation

 

 

 

The Elephant in the Room – Self Isolation: Veg About

The Elephant says:

Since it’s only us

Here’s our new plan

No need to cook

Eat out of the can.

Click here for: The Elephant in the Room,Self Isolation Selfies 

Click here for : The Elephant in the Room , Self Isolation and Self Indulgence

Click here for:  The Elephant in the Room, Liven up your environment